Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Rate this topic

Recommended Posts

Not sure if this was mentioned but...I have Mitral Valve Prolapse (A heart valve keeps "flopping" around, sorta gets backed up and then releases) it is VERY common and the Dr says not to worry about it unless you get other symptoms of course)

My symptoms were dull to severe chest pain, sorta like someone was squeezing my heart. I don't remember getting Sharp pains however.

I also have Mitral Valve Prolapse, and a lot of the symptoms that people are describing are consistent with it. You can get diagnosed with an Echo.

Many doctors and health professionals do not understand it and play it down, telling patients that “it’s all in your head”. It is not.

Not everybody that has MVPS (Mitral Valve Prolapse Syndrome) has Celiac, and vice versa, but I believe that some of the nutritional problems that exacerbate MVP in Celiac patients may be caused by Celiac in the first place. Magnesium supplementation is something that people with MVP often benefit from. Ditto for Omega 3.

Here's some good links:

http://www.mvprolapse.com/

http://www.mvpsupport.com/

http://www.ctds.info/mvp1.html#mitral_magnesium

Share this post


Link to post
Share on other sites

I, too, had a slightly low potassium level and I still get chest pains from time to time.

I also get like, I feel exerted just by doing the smallest movement. For example, if I roll over in bed my heart will beat like I was running. My dr says not to worry about this..hmmmm...sounds like all of our drs say not to worry about this but it is scary.

Share this post


Link to post
Share on other sites

My dad has mitrol valve prolapse. I have asked my doctor about this because I've read it can be genetic but he didn't seem concerned. (sigh, isn't that the way most docs are?)

I am wondering more about angina at this point. I just got an appointment for a rheumatologist for next week because of my high ANA titer level in my arthritis test last month. I have read that people who have Raynaud's phenomenon have higher likelihood of migraine (I have both, though haven't had the Raynaud's in a few years) and that they both can be correlated to prinzmetal angina (non-stress induced). Anyway, yippie. I don't know how all this works and if it's all connected or not but I have been having that chest pain my whole life. I hope to find out it's just irritating, or at least that I find out something about it. Right now I'm just hoping like crazy I don't find out I have scleroderma...

Stephanie

Share this post


Link to post
Share on other sites

I've had those under the rib pains for years I also thought it was heart related. FWIW, mine turns out to be a muscle that's under the breast right under your arm. I have to get that one worked by a massage therapist every once in a while or I'm in agony for weeks. It also flares up the muscles in my back under the shoulder. But I've also had those stabbing-hot-poker-in-between-the-ribs that just murder. I can't breathe, move or do anything when those hit.

Share this post


Link to post
Share on other sites

When I get a really bad stomach ache (especially from gluten) I get horrible chest pains that hurt so bad I cannot breathe lying down. I think it's GI related. The pain starts in my stomach and moves up towards my chest and into my back. The GI doc hasn't been able to explain it to me.

I had open heart surgery and have heart problems too... but I don't have chest pains from my heart anymore.. Also, it's very common for those who have had their chest cracked to get chest pains that are probably from the rib cage. The cartilage and even the bones can be ripped or damaged causing chest pains.

Share this post


Link to post
Share on other sites
Costo is another auto immune problem. It is inflamation of the cartiledge connecting the rib cage to the breast bone. Sometimes it is also caused by a sports injury. My doctor says that Celiacs would be more prone to have Costo.

em.

Can open heart surgery cause this as well?

Share this post


Link to post
Share on other sites

Scleroderma is an autoimmune connective tissue disease, like lupus and rheumatoid arthritis. It is characterized by thickening, stiffening skin, especially on fingers, arms, face, and can occur other places in the body. Internal organs can be affected.

I don't have any skin problems but do have achy joints and knuckles in my hands, sometimes in my feet (these are called arthralgias, I think) and was diagnosed several years back with Raynaud's phenomenon. Recently, I had some tests done and my ANA (antinuclear antibody) test was high positive, 1:320, and had a particular pattern (they look for that) called nucleolar, which cannot definitively diagnose you but can help point a doctor in the right direction. Anyway, 95% of people with scleroderma have high ANA and many have the nucleolar pattern. Also, first presentation is often Raynaud's phenomenon. Joint pain/arthritis is also a symptom.

Anyway, hoping I don't have it - can somehow be ruled out, but despite not having a skin reaction, I seem to have a few things that are related to it. I just got a rheumatologist appointment for next Friday the 15 when I'm sure I'll get more testing and stuff done.

Sounds kind of scary. And it's not as simple as controlling with diet. :huh:

Stephanie

Share this post


Link to post
Share on other sites

I get chest pains too that catch me out of nowhere. they are mostly on the right though for me, but sometimes on the left just above the heart. Its annoying :P

~lisa~

Share this post


Link to post
Share on other sites

I don't know if it's just this medication I'm taking-Effexor or what...but lately I get winded and my heart beats fast if I even just get up and walk around the house or turn around in bed. I told my doc and he said this is normal? Last time I was in his office my blood pressure, if the nurse took it right, was 82/60-and it's usually right about 120/80. Plus my potassium was just a smidge low, again he said no issues with either of those? He seems like a really good dr...am I crazy?

Share this post


Link to post
Share on other sites

Last night, a friend was over when I had a small chest pain attack and she immediately quizzed me on it and said it sounded a lot like when she has pleurisy. FWIW, that is also common in scleroderma. Sigh. Well... I guess I'll know a lot more next week (I hope!) when I have my rheumatologist appointment.

Stephanie

Share this post


Link to post
Share on other sites

:rolleyes:

Montess84=January 13, 2006

jk - I have had chest pain since early Oct 06. Got numerous chest xrays to see if i had a broken rib, cracked rib, etc. Nothing. Gave me a chest support belt thing, muscle relaxers and sent me on my way. Helped some. Then the pain moved from my rib cage right under my left breast to behind my left breast, it kinda moved up. Lower rib doesn't really hurt anymore. But I never went back to the dr (it was a doc in the box). She said to come back the next week and schedule me for CAT scan, but I still haven't gone. Now with in the last 2 weeks or so the pain moved to my upper pectoral muscle above the boob and it hurts to my armpit. Hurts to blow my nose. I saw a posting from rmmadden about having the chest to armpit pain, curious to know if they had the pain lower and then higher. I don't go to the dr on a whim, i will live with the pain for weeks/months before i go to the dr. but this hurt so bad i had to go. my regular physician was no help as usual, she did xrays like doc in box but didin't see any rib injury. I went to doc in box about a month later because it was still hurting so bad (it did ease up some after my phs gave me steriods but i could tell it was still there, but anyway i guess its my fault for not following up. But it was nice to see other people describing exactly the same pain as me.

Does anyone else get chest pain? I have it right around my left breast...it's a stabbing pain that can linger for days.

My doctors have said it's not heart related b/c I don't have any numbness, tingling, back pain, shortness of breath, etc and it has been going on for quite a few years. They think it's muscle related so I wanted to see if anyone else has these issues. I also get stabbing pains under my ribs....anyone else? those can be so sharp they take my breath away. Then these mystery pains will go away and not come back for a month, two months, or even more!

What gives???

I want to know if it's Celiac related or not.

I waterskiied this weekend so maybe I aggravated a muscle problem; you use all of your chest muscles when waterskiing.

any thoughts/help would be greatly appreciated,

Jennifer

Share this post


Link to post
Share on other sites

:rolleyes: "Montess84=January 13, 2007

Hey Bob My pain started at the rib right under my left breast, hurt to laugh, sneeze, blow my nose; doc gave me steroids, made it more tolerable but it was still there, then the pain moved to behind my breast, but i didn't return to the doc (the doc in the box was going to schedule me a CAT scan if the pain didn't get better) but as usual, i didn't go back. Now the pain has moved to my left pec muscle and hurts to my left armpit. This is very strange. Never have had pain move; had pluersy (not sure how to spell) about 10-12 years ago, pain was on right side, about midway hip to breast, felt like someone was stabbing a knife in my rib. Do you have any pain before, like maybe lower like mine? Also, do you remember anything you did that could have strained your rib muscle? I fell off the bed and caught myself with my left arm (however the pain had begun 3 weeks before I fell; it started after i had stuffed myself at a Cracker Barrel, started sneezing (and I do have hard, loud voilent sneezes) I couldn't stop sneezing, it hurt so bad. After the first sneeze it felt like someone had stabbed me right below my left breast with a knife. Got a little better over the next week or so, but then i fell and its like it aggrivated the problem. It hurt so bad I was crying my eyes out at a business gathering and the next day at the airport. Would love to hear back from you. Let me know if you have any new information as to what this couled mean, be. Thanks.

Jennifer,

I get the chest ache on the left pectoral leading down into my armpit. Most of the times it is just an ache but occassionally I will get a momentarily sharp pain. I went to the doctor and wore a heart monitor and everything is normal. I take my BP daily (which is good) and exercise regularly and have never been short-of-breath (This is how I double-check myself each day). I guess it's just something some of us have to live with.

Hope this helps.

Cleveland Bob B)

Share this post


Link to post
Share on other sites

I was getting very strong chest pains and found out I am also allergic to Millet. Chest pain for about 8 hours at a time. I finally found the link after always having strong chest pain after having gluten free banana bread that had millet in it. Millet showed up on my test at the natural pathic doctors appt. I also get chest pain from gluten found in salad dressings but they don't last as long as the millet thing. So it could very well be something that is gluten free but your body just can't handel. Do you keep a food journel?

Share this post


Link to post
Share on other sites

Yup I get them too, but they usually only last a half an hour to an hour with me. I don't get them very often, but the stabbing rib pain used to be constant with me and I've been rushed to the hospital with it before!! Mine has almost completely gone away since going gluten free, but once in a while I get a mild case of the rib pain again!!

I hope it goes away for you soon!!

Share this post


Link to post
Share on other sites

Costalchondritis can be caused by a number of things. One of them is a vertebral rotation in the thoracic spine. Because the ribs are connected in between the side portions of the vertebrae, if one is rotated, it twists the rib. Kind of causes it to "torque". If you can find a physical therapist that specializes in manual therapy --particularly if they use Paris or Maitland techniques, you can get them to address that.

Also, tight pectorals -- Pectoralis Major and Minor -- can cause costalchondritis.

Basically, it is an inflammation of the cartilage that connects the ribs to the breastbone.

And open heart surgery can CERTAINLY cause it!!!! Unfortunately, the techniques that are used to address vertebral rotations can't be used on open heart patients because your breastbone was split, your ribs were pulled apart (talk about rotating the vertebrae!!) then your breastbone is literally wired back together. MOST of the patients that I treated who had open heart surgery had costalchondritis. I was only able to teach them the stretches of the pecs, and how to mobilize the ribs downward --that tends to help quite a bit. (It is GREAT for singers. My daughter sings opera, and I can mobilize her ribs downward, and her ability to have better breath control is amazing.)

Share this post


Link to post
Share on other sites

I think I just found out what's been plaguing me for a year and a half, after searching on the internet; it matches the symptoms exactly. It's called precordial catch syndrome, or Texidor's twist. I get a sharp pain under my left ribs, and a sharp pain in the chest when inhaling, usually when laughing or talking without taking a breath. It's like someone is twisting my heart, though it's not considered a cardiac event. Apparently it's prevalent in childhood and adolescence, but can occur in adulthood. It's benign, and they can't really surmise as to what causes it, and they don't treat it. Very interesting.

Share this post


Link to post
Share on other sites

I sometimes experience pain in the heart, but I think it's acid reflux. The worst problem I get when glutenized is heart palpitations. My heart's been checked out (and it's fine) and it took years for me to make the conclusion that it has everything to do with diet. Since going gluten free a few weeks ago, no palpitations (and I've had them off and on since age 13) and very little chest pain.

I hope this clears up for you soon.

Share this post


Link to post
Share on other sites
Does anyone else get chest pain? I have it right around my left breast...it's a stabbing pain that can linger for days.

My doctors have said it's not heart related b/c I don't have any numbness, tingling, back pain, shortness of breath, etc and it has been going on for quite a few years. They think it's muscle related so I wanted to see if anyone else has these issues. I also get stabbing pains under my ribs....anyone else? those can be so sharp they take my breath away. Then these mystery pains will go away and not come back for a month, two months, or even more!

What gives???

I want to know if it's Celiac related or not.

Jennifer

this is great (lol not really) I have that exact same pain!!.. my left breast area. When i was super sick with hypo/celiac I actually went to an ER and they did a .. (forgive me an EKG? was a few years ago).. some sort of thing where they test the current through your body? and the Dr. said it's location shows that its not from your digestive track and that the test they did was normal and that it must be an inflamed tissue. I'm having it now. It certainly is scarey. what else but a heart attack would do that but I'm still here. Has me very concerned but apparently no one else. I tried to chalk it up to diet (seeming occured after eating chicken) but its too hard to tell. Sometimes its there for motnhs sometimes it goes away. I have no idea but I find it fascinating that there are other people with celiac that also have it. I wonder many times since antibody diseases go hand in hand (meaning if you have 1 chances are higher you have some others). seemingly my whole body is inflamed including my heart muscle or chest muscle as everything else in inflamed also.

I should also note that its most always on the left but HAS been on the right hand side too.

Share this post


Link to post
Share on other sites
When I get a really bad stomach ache (especially from gluten) I get horrible chest pains that hurt so bad I cannot breathe lying down. I think it's GI related. The pain starts in my stomach and moves up towards my chest and into my back. The GI doc hasn't been able to explain it to me.

I had open heart surgery and have heart problems too... but I don't have chest pains from my heart anymore.. Also, it's very common for those who have had their chest cracked to get chest pains that are probably from the rib cage. The cartilage and even the bones can be ripped or damaged causing chest pains.

The same thing happens to me.... when I get contaminated I get what others would call heart-burn-like chest pain.....I know that it is gluten because other things happen too!! you know what I mean....But this chest pain HURTS and it is hard to breathe....especially when I lay down....my doc can't explain it either....My husband tell me that I should just take my nexium every day and that wouldn't happen....but for me, this is how I know when I get contaminated....

Hope this helps.....Laurie

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • May 29, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • June 01, 2019 Until June 02, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
    • July 07, 2019 Until August 03, 2019
      0  
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.


×
×
  • Create New...